Man with Tourette Syndrome Pleads with NHS To Increase Cannabis Prescriptions

“It’s something I dreamed of as a kid, taking a small pill and it would just disappear, and now I have it basically.”
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Conor Ryder, from Dorset, England, a man living with Tourette syndrome, is urging the government to make medicinal cannabis more accessible through the National Health Service (NHS), the BBC reports. Currently, he spends thousands on prescriptions from a private clinic as it’s the only treatment, in his experience, that effectively manages his severe tics. The NHS is the U.K.’s publicly funded healthcare system.

Medical marijuana became legal in the U.K. in 2018. But the government insists they need more research to ensure its safety before making it more widely available. 

Cannabis remains illegal on a federal level and for adult use. 

Due to the scarce availability of NHS prescriptions, Ryder pays £300 every month, which, to afford, he dips into his savings. 

“I spoke to my doctor and he said that he… didn’t want to refer me, so I went and referred myself off. I went and looked at the clinics,” Ryder told the BBC. 

Ryder’s situation isn’t unique. Private cannabis clinics across the United Kingdom have grown substantially since legalization, with statistics indicating they’ve issued over 140,000 prescriptions in the past five years. The medicine they sell just isn’t always affordable for patients like Ryder. 

As research published in June of 2023 suggests, building on additional research that also indicates cannabis for the condition, evidence backs up what Ryder says, indicating that THC and CBD can improve the side-effect profile of Tourette syndrome. These include repetitive movements or unwanted sounds (tics) that one can’t always control — and can disrupt one’s personal and professional life. 

According to the Mayo Clinic, tics usually appear between the ages of two and 15, with the average age around six. Tourette syndrome is more commonly seen in males, who are about three to four times more likely to develop it than females.

In this study, they did a double-blind, cross-over trial with people who have severe Tourette’s syndrome. Using random assignment, they gave participants an oral oil-based tincture with increasing amounts of THC and CBD for six weeks, followed by six weeks with a placebo, or the other way around, with a four-week break in between. 

The researchers used the Yale Global Tic Severity Scale (YGTSS) to measure their tics’ severity. They also used video assessments of tics to assess how they affected their daily life, anxiety, depression, and obsessive-compulsive symptoms. 

It’s worth noting that all of these comorbidities are also often treated with medical marijuana. 

They then checked if the results were related to the levels of cannabis compounds in the blood in addition to performing cognitive tests at the start and end of each treatment.

The results suggest that people in the active treatment group significantly reduced their tic scores more than those in the placebo group. This means that the treatment with THC and CBD helped reduce the severity of their tics. However, some people in the active treatment group reported problems with their thinking, memory, and concentration. The research indicates that cannabinoids such as THC and CBD can help people with severe Tourette syndrome by reducing their tics and improving their quality of life. 

Mr. Ryder is not surprised to learn that the private sector of the cannabis industry is booming. For him, medical marijuana has become an absolute necessity. Diagnosed with Tourette syndrome at age 13, he lives with various noticeable tics, from animal-like sounds and loud bangs to physical gestures like winking, blinking, and shoulder rolling.

These tics cause him significant distress and currently make him unable to hold down a job, further compounding his struggle to pay for his medicine in a vicious cycle. But he’s able to manage his symptoms with medical marijuana and a vaporizer. 

“It’s something I dreamed of as a kid, taking a small pill and it would just disappear, and now I have it basically. I’m hoping that soon I’ll be able to work and maybe be able to manage it because that’s the only way if it doesn’t become available on the NHS. Every medication that they’ve been able to give me, they’ve made me into basically a zombie. Cannabis is the only thing that controls the tics,” he tells the BBC. 

The Department of Health and Social Care says that medical marijuana could be paid for by the NHS where there was “clear evidence of their quality, safety and effectiveness,” the BBC reports. “It is important to carefully review evidence on unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll-out on the NHS more widely.” 

An NHS spokesperson continued that: “While there is limited evidence on the safety of these unlicensed products, we continue to encourage manufacturers of these products to engage with the UK medicines regulator, which would provide doctors with the confidence to use the products in the same way they use other licensed medicines.”

There are currently over 300,000 kids and adults living with Tourette Syndrome in the U.K.

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